Ruby

New York, NY

Occupation

Student, Grade 6

Technology

Body Powered, Activity Specific & Myoelectric with Esper Multi-articulating Hand

Handspring hero Since

2014

Success Story

Written by Debra Latour, OTD, M.Ed., OTR/L, FAOTA

Ruby was born with a congenital limb difference of her left arm at the below elbow level. After an initial consultation in New York City, her parents visited the Middletown, NY clinic with Ruby when she was 14 months old, for delivery of her first prosthesis. She received a passive TRS hand device with a Mini Mushroom Tumbler to use for crawling, weight-bearing, activities and to facilitate developmental milestones.

When we first met Ruby and her parents, their main goals were to develop muscle memory using her prosthesis for current and future use to increase Ruby’s repertoire of functional and adaptive strategies. We worked with Ruby, her family and her early intervention therapists to address these goals. She has used a body-powered prosthesis and is now learning to use an externally-powered device.

Ruby has always had a positive attitude throughout this entire process, and her family, including her older brother have supported her and her endeavors. She is fiercely independent; interested in many activities and desirous to experience life fully. This positive attitude, and her amazing support system offer an opportunity for collaboration with the Handspring team.

What Stands Out

One of the most important elements of Ruby’s journey is her family. Her parents understood their young daughter and had a “vision” for her future. They were open to multiple innovative experiences that would help them, -and Ruby- to achieve the quality of life and ability they desired. One of the most remarkable moments was their willingness to trial a body-powered prosthesis simulator to better understand what her experience would be. Even her older brother Jake participated in this effort because he wanted to be sure that it was “right” for his little sister. Ruby’s parents supported us to collaborate with community practitioners involved in her care, and allowed us to implement telehealth for prosthetic rehabilitation pre-Covid and before it was a “thing”. Ruby’s progress to date is remarkable due to her own tenacious spirit and the strength of her family.

Nikki (Ruby's mom): "In the beginning, we made all the decisions, as she was too young to make them. She is now older and can make informed choices for herself. We of course help and guide her, but we no longer “make” her do anything. We work together. She isn’t going to like or use the device if she isn’t on board."

Jake (Ruby's older brother): "The most important takeaway I have from witnessing Ruby’s development as a person with a limb difference has been the importance of struggle and trial in her process. Her journey up to this point is one of improvement and success, both in her confidence, and capability to make use of prosthetic devices, which is a source of pride and accomplishment for her, and of admiration and happiness for me and my family. However, it is equally important to view her journey as a long series of mountains and valleys that have challenged her and spurred the motivation for self improvement and fulfillment. Many times I’ve seen her go through moments of doubt or even despair that have built her into the strong, confident, independent and proud person she has become. In moments where she felt the eyes of her peers, struggled with an activity in occupational therapy, or couldn’t immediately understand the function of a prosthetic, she was given the opportunity to turn these difficulties into lessons that have given her confidence and intelligence that informs how she carries herself and continues to grow."

Years later, Ruby has exceeded all the goals…

Ruby & Her Family's Advice

Ruby: "I think the best advice I could give for those like me is two things. The first one is to find your people and those who will support you along every step of the journey. It is important to find people like you, who are going through the same things and understand. It is also important to find people who will support you and root for you, like Handspring and my loyal friends from the city have done for me. And people who support doesn’t just mean others with limb differences. My friends from the city and part of Handspring don’t. I think it is important to not block yourself from others without limb differences. The second piece of advice I have is to always be positive and know that you are perfect just the way you are. There is nothing wrong with limb differences, they are just, well, different. Don’t let anyone dampen your spirit and light. It is a beautiful thing to have a limb difference, and you shouldn’t let anyone hurt you or tell you otherwise. You are perfect, and you must know that. You must be as bright and positive as possible to show anyone who disagrees with this that you truly are, and know how to take the high road. Because the worst thing you can do is to sink to their level."

Nikki (Ruby's mom): "My first piece of advice is to find your people - for parents of young amputees, having a sense of community and belonging is so important. It helps our children when they see others like themselves. When they have friends that understand their world, because it is their world also. For us parents, it is wonderful to have parent friends that understand our struggles too. Find the advocacy groups in your area, and even those not in your area. Attend community building events, travel to them if you can. Find the camps that are specifically for limb different children (and their families). We have friends, with limb differences all over the country now, and having that community is one of the reasons that Ruby is so confident.

When Ruby was 3 years old and had recently started preschool, out of the blue one day when we were walking home, she started sobbing and declared that she wanted to CHOP OFF HER LITTLE ARM, SO A BIG REGULAR ARM WOULD GROW BACK IN IT’S PLACE. I honestly didn’t know what to say, I just knew I couldn’t start crying with her, as I needed to comfort her. As soon as I could, I texted MY group of moms that all have children with little arms asking them for their advice on how to help Ruby. About an hour later, I had a video to share with Ruby from her limb different “Big Sis” who simply sent Ruby a loving message and making sure that HER little arm was HIGHLY visible. She never said anything about the breakdown…just made sure that she remembered that she had friends that were just like her and who loved her. Ruby NEVER broke down again, never requested any arm other than the one that she was born with.

My second piece of advice is to choose your team!!! We interviewed four different prosthetic companies, before choosing HANDSPRING (which was the first company we met!). This is clutch. You have to feel comfortable and trust the people that you are working with. You have to know that you are being heard. This is so that if you want something different or don’t think something is working, you can freely say so. Additionally, you want your team (and Handspring has been on Team Ruby since she was 14 months old) to be creative. We have asked Ruby’s team for help with several “how should we do this?” questions over the past 10 years. And the best part is how fun it actually is for all of us to put our heads together and come up with the solution. This approach should be used for all the members of your team (OT, PT, therapist, etc). Use all the resources you have. Ask questions. Be an active part of the team."

Larry (Ruby's dad): "My advice is to please know "It's going to be OK." When Ruby was a baby we went to a Helping Hands Foundation Outing where we met Handspring. I expressed my anxiety about Ruby's future and her quality of life. I was assured that it was going to be OK. Later, I watched as dozens of upper-limb different kids went nuts swimming in the pool, laughing and yelling with the biggest smiles. And I thought to myself, "It is going to be OK."

It also comes as a relief to learn that every member of this community is an over-achiever. What stands out to me is how Handspring has really become Team Ruby. Ruby came to Tom and company as a smart toddler who knew how to express herself. And they truly listened to her and involved her in every step along the way.

This relationship grew Ruby's advocacy skills and gave her a sense of ownership. It's obvious that Handspring cares deeply about my daughter and will go the extra mile to act in her best interest. It's comforting to have such an able ally in our effort to give Ruby all the tools she will need to navigate her world"

Jake (Ruby's older brother): "The greatest piece of advice I could give is to trust the process. Build an understanding for both the person with the limb difference and their support network that setbacks or challenges are natural and have the opportunity to provide knowledge and comfort in the future."